World Hospice & Palliative Care Day- Oct 13 Taking Stock of Where We Are

I checked my phone as it buzzed with a text message: "Dad's in the ER." Heart sinking, I replied to my friend, Martha, "What's up?" She went on to explain that her dad, a long term Alzheimer's patient who lived in assisted living had taken a sudden turn for the worse. He had been in and out of hospice so I knew that she was trying to avoid a hospital stay and also knew that this event might be hard on her and on her dad who didn't do well when moved out of his familiar environment.

Despite our best preparations and long term plans, sometimes our loved ones' life endings don't go quite as we had hoped. The Hospice and Palliative Care disciplines have made huge inroads in helping us all shift our expectations at the end of life, but as individuals and a society, we are not there yet. We continue to see astounding statistics regarding long ICU stays and extreme interventional care when there is minimal expectation of improvement or quality of life. In his article on end of life in intensive care, Curtis states: "Four decades of research on end-of-life care suggests that people who are dying often spend their final days with a significant burden of pain and other symptoms and that many receive care they would not choose (End-of-Life Care in the Intensive Care Unit )."Haunted by the times when there is survival and discharge and patients make gains toward returning to their previous levels of function, we resist making changes that would seem to limit that avenue of care.

We all want what is best; there is no doubt about that. As we celebrate Hospice and Palliative Care Week, let us consider the importance of helping our families and communities have the opportunity to lean toward wholistic, peaceful end of life care while at the same time leaving the door open for those that have different end of life care goals.

First of all, the terms "hospice" and "palliative care" are easily confused, even among health care providers.

Palliative Care: medical and related care provided to a patient with a serious, life-threatening, or terminal illness that is not intended to provide curative treatment but rather to manage symptoms, relieve pain and discomfort, improve quality of life, and meet the emotional, social, and spiritual needs of the patient. Unlike hospice, palliative care can and should be delivered while patients continue treatment for their diseases.

Hospice: a program designed to provide palliative care and emotional support to the terminally ill in a home or homelike setting so that quality of life is maintained and family members may be active participants in care.

The two terms are not mutually exclusive and in our current practices, they tend to intertwine with palliative care often entering the picture first, as the patient continues in treatment but needs supportive symptom management; later, as treatment becomes ineffective or no longer wanted, the patient and family transition to hospice care, usually provided by an agency in the home setting, wherever that home is: traditional housing, assisted living or nursing home. Occasionally, communities have access to a hospice house and patients will receive end of life care there for situations that require active symptom management beyond the scope of home care.

As professional nurses, we desire to provide the very best care we can for our patients. We want to be agents of positive change, ensuring those in our charge have the information they need and the access to receive the type of care they choose. As advocates, it is important that we are fully informed about options, changes, and approaches to end of life.

Advance care planning is part of the answer. Often during an admission, we are asked to interact with our patients regarding whether or not they have a living will or have engaged in any discussion with their loved ones about end of life care. While this can be awkward, our own attitudes can help pave the way for this discussion to happen-all with the end goal of providing our patients with the care that they choose. Talking about what we want ahead of time, does not necessarily ensure that it will happen, but it does pave the way for the possibility.

So what can we do?

• Understand the terms involved so that we can explain and answer questions.
• Get additional training, if desired, on how to approach these discussions.
• Advocate for wholistic end of life care, if we know that is what the patient desires.
• Ask questions at crossroads in decision making to clarify where we are going in care goals and ensure we are on the same path the patient and their family desire.

Martha's dad ended up spending a restless night in the hospital and going back to his regular facility the next day with hospice. This happened because his daughter was able to clearly state her goals of care for him, articulate his needs, and advocate for what she knew was best. Despite pressure to stay inpatient to manage symptoms of agitation, she had a bigger picture view that informed her choice to get him back where he would be most comfortable. He died peacefully with her at his side a few days later.

World Hospice and Palliative Care Day 2018 is a time to take stock, see where we have been and consider our path forward. As we pause to assess, we can be inspired to move forward with new energy and enthusiasm.